Portraits of a Killer : Visual Expressions of Patient/Parent Expertise on Social Media Chapitre d’ouvrage - Novembre 2022

Juliette Charbonneaux, Karine Berthelot-Guiet

Juliette Charbonneaux, Karine Berthelot-Guiet, « Portraits of a Killer : Visual Expressions of Patient/Parent Expertise on Social Media  », in HCI International 2022 - Late Breaking Papers. Interaction in New Media, Learning and Games, 2022, pp. 30-40

Abstract

This paper aims to investigate the search for online information and support for rare cancer patients and their families, focusing on a very specific type of cancer, glioblastoma. Glioblastoma is a rare brain cancer more than often diagnosed at a late stage, with a very poor prognosis and huge and disabling neurological impairments at the time of identification of the disease. Therefore, the analysis deals with the means of expression of the patients’ families and not of the patient’s themselves and on focuses on the understanding of their using of pictures, specially on a very specific platform : Instagram. Through the semio-communicational analysis of the french Instagram account #glioblastome, which includes 472 images and their captions, the study aims to understand how, in the case of glioblastoma, the mediation of digital writing and picturing can promote the recognition of the parent as a potential expert in this disease characterized by its rarity.

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